Brain Disease

My mother spent much of my childhood in her room, with the shades drawn, noise kept at a level quieter than a whisper, and my siblings and I were left to fend for ourselves.

Even the lightest knock at her door was met with a weeping “What do you want?” and we small children felt a crushing guilt – our mere existence caused our mother such a severe pain that at times she begged for death.

Some of my first memories are of my mother lying upon the couch with a cold compress upon her head as she begged the heavens above for mercy from the migraines from which she suffered.

Eventually she would retreat to her room until relief would wash over her and she would emerge to begin the task of reassembling the household.

As the eldest child I was often left in charge of my two brothers and baby sister and I grew to be resented as we wanted our mom and I was no substitute.

What we didn’t know then was that she suffered from the early stages of a debilitating disease by the name of Multiple Sclerosis. As a young child, I recall the day that one of the many doctors she saw explained that people who experienced migraines and vision problems such as hers were likely to develop MS, and that all she could do is ‘wait and see what happens’.

Once we returned home, my mother retreated to the safety of her room, and she began to sob. Soulful, lost and hopeless body wrecking sobs. I was not yet four and Gordon was nearly two.

After I’d been married for a few years, other symptoms began to appear and after several visits with the every revolving array of doctors the diagnosis that we’d grown to dread but expect materialized. My mother was now a statistic. She had MS.

Anytime thereafter it she referred to her condition as ‘A Brain Disease’, and as time passed it grew to become a source of sorrow, frustration and sadly for me, the loss of my mother.

With time, her condition progressed, her body began to fail in one way and then another.

Her dexterity and balance were the first observable difficulties, but it was the loss of the intangibles; her memories, temperament and clarity of thought that signified the devastating loss of my mother.

Until the birth of my daughter, JB, I was a dutiful daughter. Whenever my mother needed assistance with technology, Charles and I were there to help. Post-surgical care on many occasions was provided by me for as long as I was able to break away from work and Charles. AunT, my brother Brady and Charles and I performed marathon cleaning and organization sessions at my parent’s house.

Even after we relocated to River City from the Northwest, I flew home to provide assistance for her, leaving BW with who was not even a year old with Charles to help her with monumental tasks. I did it because I loved her, because I was her daughter and because that’s what you do for family.

So it was with the sensation of a sucker punch when vile and hate filled emails by my mother began appearing in ’email Inboxes’ in which apparent transgressions against her were laid out with great detail. Conversations taken out of context were twisted and used as ‘evidence’ of how everyone but Gordon had wronged her.

Phone conversations evolved into verbal assaults and guilt trips, and over time it became too psychically painful to maintain contact since nearly every exchange resulted in increasingly long and painful periods of self-doubt and depression. Many hours were spent in my garden with AunT trying to figure out what we had done and what we could do differently, but to no avail; the emails and phone calls only grew worse with time.

In the last of my conversations with my mother, I would inquire as to characteristics or mannerisms that I had as an infant, in trying to grasp if my own daughter was following my path of development or Charles’s, since JB was so very different than BW. It was also a desperate attempt to try and maintain some sort of bond with my mother. It was clear that her remaining memories of her children were solely of AunT, as her recollections were the of the same memories I had of my wiggly sister. It was then that I mourned her passing.

When BW and JB grew old enough to sense my emotional state after conversations with my mother, it  became painfully obvious that it was time to break away. The challenge of being a dutiful daughter meant that I was not able to be the kind, loving and attentive mother that I strove to be and my children began to suffer.

I miss my mother. The mother that once was; the mother that when I was in my late teen years and she was in a good mood, I could spend hours talking on the phone with about nothing at all. I miss the mother I dreamt of having when my babies were tiny and life was overwhelming and I was adrift in the newness and confusion of motherhood.

More than anything though, I miss the mother who was supposed to provide her youngest daughter with comfort when she learned she had a brain tumor and needed surgery or faced certain death. Instead it was I who provided comfort for AunT as she conveyed what would be our mother’s last words to her “Now you know what it’s like to have a brain disease.”

Sadly for my sister and I, that mother that we both needed was lost to us before we grew to become adults ourselves.

I can’t imagine the nightmare MS has caused for my mother, and it was once my greatest wish to be there with and for her. Sadly though, I know that in order to be the best mama I can be for BW and JB, to be the best partner to my darling Charles, and to be the healthiest me possible, that is no longer an option.

So, as my little family celebrates Mother’s Day each year and the kids shower me with attention, kisses, hugs, gifts and loves, my soul mourns for the mother and grandmother that we were supposed to have, but who has been lost.

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